having biological children might still come true.
A lack of resources for Black patients
The first description of sickle cell disease in medical literature was published over a century ago. Because most sickle cell patients in the U.S. were Black, it quickly became labeled as a “Black disease.” And with that came a legacy of systemic racism that still affects patients today.
Black patients tend to have less social capital and fewer resources, says Dr. Lydia Pecker, a sickle cell disease researcher and an assistant professor of medicine at Johns Hopkins University.
Pecker says that for fertility treatment, the resources available to cancer patients differ starkly from those available to sickle cell patients. “There are any number of foundations, large and small, that help support and pay for fertility preservation for people with cancer,” Pecker notes. “Those foundations actually work with fertility preservation centers to negotiate lower rates for affected people.”
Clear clinical guidelines state that children who have cancer and are going through chemotherapy should be referred for fertility preservation.
Children with sickle cell disease going through transplants are exposed to chemotherapy, too, “but we don’t really have guidelines like that yet for people with sickle cell disease,” Pecker shares.
It’s not a perfect comparison, she adds, because the kinds of chemotherapy drugs used in pediatric cancer are different from the chemotherapies used in sickle cell treatment. But fertility preservation can be crucial when there is any risk of treatment-associated fertility impairment, Pecker says. Without clear and widely adopted clinical guidelines, sickle cell patients may not be referred to appropriate care.
Pecker says current medical practice forces sickle cell patients to make a difficult choice. “You can have treatment or you can have fertility,” she shares. But in cancer care, she says, the thought is: You can have treatment and you can have fertility.
In the U.S., health insurance coverage for fertility preservation and treatment is not guaranteed and varies from state to state. Only 12 states have laws that mandate fertility preservation coverage for patients who undergo treatments that could imperil their ability to have biological children — usually referred to as iatrogenic treatments — like chemotherapy or radiation.
After Woolford’s transplant failed, the disease continued its assault on her body. And Woolford has had to come to terms with the impossibility of ever having a biological child. She launched a nonprofit, the Sickle Cell Reproductive Health Education Directive, to raise awareness of fertility issues at medical conferences and among patients. A future goal is to provide financial grants to sickle cell patients struggling to pay for fertility preservation and treatments.
Most days, Woolford finds the work empowering. On other days, she admitted, it reminds her of the bleak reality that she will probably never conceive a child.
“It’s really hard because I don’t think a lot of people realize that I’m fighting for something that I didn’t have access to,” she shares.
At this point, she says, it’s no longer a medical justice fight. It’s a reproductive justice one.